What’s in a Name?

During a recent discussion about diagnoses, a reader asked, “Does it really matter what the doctor named it?” 

Absolutely, it matters and here’s why.

  1. Using the correct name for a given disease improves communication between healthcare providers to provide good continuity of care.
  2. It gives researchers a common language and clear diagnostic criteria, providing uniform and reliable results.
  3. A diagnosis determines the course of treatment. To use an incorrect term can mean delays in effective treatment.

Headache specialists around the world use the International Classification of Headache Disorders, 3rd Edition (beta) to diagnose migraine and other headache disorders. It is considered the gold standard by which all headache disorders are diagnosed. Yet many doctors do not use the ICHD-3 (beta). That’s where the trouble begins. Often patients will receive a diagnosis from their primary care physician, a general neurologist, or other specialist. They walk away with a non-uniform diagnosis, expecting other doctors to understand these terms. Not using the accepted language to refer to a disease creates confusion on the part of doctors and patients.

The ICHD-3 (beta) separates headache disorders into 2 subtypes: primary and secondary.

Secondary headache disorders are those for which the cause is known. For example, a person with meningitis will experience severe headache pain. Once the infection is resolved, the headache usually disappears. There are hundreds of secondary headaches.

Primary headache disorders don’t have a known cause. As more research is done, we may find fewer primary headache disorders, as study results produce evidence of a cause. For the moment though, primary headache disorders are classified in four ways:

  1. Migraine
  2. Tension-type headaches
  3. Trigeminal autonomic cephalalgias
  4. Other headache disorders

While patients can certainly experience headache disorders from more than one category, it is incorrect to refer to a headache disorder using more than one category. Someone with both Migraine without Aura and Episodic tension-type headache should not be diagnosed with “tension migraine.” The term “tension migraine” does not exist in the ICHD-3 (beta) and has no established treatment protocol. When a person is diagnosed improperly, treatment is often inappropriate and delays relief from symptoms.

Commonly used inaccurate diagnoses

  • Retinal/optic/ophthalmic Migraine
  • Classical Migraine
  • Common Migraine
  • Complex Migraine
  • Cluster Migraine

None of these terms exist in the ICHD-3 (beta)! There are no commonly accepted diagnostic criteria for any of these terms. They mean whatever the doctor thinks they mean and the treatment could be almost anything. When a patient lists one of these as his or her diagnosis, I immediately get concerned. Any doctor who uses a diagnosis not listed in the ICHD-3 (beta) is not likely to be a headache specialist and may not understand exactly how to treat the given headache disorder.

That’s when I offer 2 important tools.

  1. A list of all the United Council for Neurologic Specialties board-certified headache specialists.
  2. A link to the online ICHD-3 (beta)

I encourage all headache patients to have quick access to both of these resources.

2 thoughts on “What’s in a Name?

  • October 4, 2016 at 10:24 am

    Tammy, Great information that I didn’t know I needed until I read it! I think it’s so important to be knowledgeable before we walk into a doctor’s office. Thanks!

  • October 4, 2016 at 1:36 pm

    This is important for everyone to learn. Giving the wrong name of a diagnosis can have deadly consequences.

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